Friday, October 3, 2008

Lessons

What a week...as always, full of lessons learned.

1) How close before a surgical procedure Evan will get sick (and he will--I swear it's a law that we have to reschedule at least once...) is inversely proportional to the number of months out we had to schedule the surgery. Next Tuesday was supposed to be his urology surgery, brain MRI, and BAER hearing tests. We haven't officially cancelled yet, but it's not looking good.

2) Even though he hadn't used it for over nine months, that still was not long enough to say Evan would never need oxygen again and turn all the tanks and regulator back to the medical supply company. After a restless night of lots of desats, Jeremy decided Evan needed oxygen for the weekend. It took Jeremy most of today to secure two small oxygen tanks from the welding supply store in town and a regulator from the hospital. I'm glad we have it, but it feels like a step backward (it felt good to be done with all that).

What is CHARGE???

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.